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Author
Topic: In Denial -- Getting to the next level (Read 7204 times)

I tested positive on May 5. Immediately after diagnosis, I drank heavily for a few weeks. I was depressed but also weirdly relieved. I was infected sometime in March. I know when I was infected because I was testing very regularly because of a few incidents that had put me at risk, so the time of seroconversion -- and in fact, the exact encounter -- were known to me. The seroconversion illness was hell. I had high fever, sore throat, profound fatigue, etc. Swollen lymph nodes. Eventually, however, my symptoms settled down. The physical ones.

Since then, I have been dealing mainly with feelings of shame, guilt, and embarrassment. I feel/felt stupid for what I did, for allowing myself to get infected, etc. I went to a few support group meetings for newly positive gay men, and they were not at all helpful.

For the last two months, I have found myself drinking heavily again on weekends. I am realizing now that this behavior is attractive to me because it releases me from the feelings of guilt and the feeling of being polluted. I am realizing now that I think I have been trying to deny the fact that I am positive. I have been imagining HIV as: asymptomatic followed by illness and death. I haven't psychologically committed myself to living with the virus, to surviving it. I realized that in part today when, reading this site, I became enormously anxious and upset. I felt hot. Uncomfortable. Panick-y. My skin started to crawl a bit.

I fear: medications, fatigue, bodily distortion. I fear rejection from colleagues should it come to that. I fear greatly discrimination.

A wrinkle in my story is that the week after testing positive, I was offered a wonderful job here in Europe. So in addition to dealing with my diagnosis, I am in a relatively remote Euro city with NO visible HIV poz population, no awareness, and no friends with HIV. I have a dream job for the time being, but I also have this condition that terrifies me.

My question is: How can I start to move beyond this self-destructive denile 'phase.' I feel that I need reassurance that things are going to be ok. But coming to a site like this only reminds me how badly things can go for someone with HIV. I'm just not sure what to do.

I am seeking friends in the virtual world that I can talk to who might be in similar positions.

Since then, I have been dealing mainly with feelings of shame, guilt, and embarrassment. I feel/felt stupid for what I did, for allowing myself to get infected, etc. For the last two months, I have found myself drinking heavily again on weekends. I am realizing now that this behavior is attractive to me because it releases me from the feelings of guilt and the feeling of being polluted. I am realizing now that I think I have been trying to deny the fact that I am positive. I have been imagining HIV as: asymptomatic followed by illness and death. I haven't psychologically committed myself to living with the virus, to surviving it. I realized that in part today when, reading this site, I became enormously anxious and upset. I felt hot. Uncomfortable. Panick-y. My skin started to crawl a bit.

I fear: medications, fatigue, bodily distortion. I fear rejection from colleagues should it come to that. I fear greatly discrimination.

A wrinkle in my story is that the week after testing positive, I was offered a wonderful job here in Europe. So in addition to dealing with my diagnosis, I am in a relatively remote Euro city with NO visible HIV poz population, no awareness, and no friends with HIV. I have a dream job for the time being, but I also have this condition that terrifies me.

My question is: How can I start to move beyond this self-destructive denile 'phase.' I feel that I need reassurance that things are going to be ok. But coming to a site like this only reminds me how badly things can go for someone with HIV. I'm just not sure what to do.

I am seeking friends in the virtual world that I can talk to who might be in similar positions.

Welcome to the forums, let me say first. There is no need to feel guilty or ashamed, this is all new to you and a lot to digest. We have all made poor choices at one point in our lives, we learn from our mistakes and move on. The same holds true for becoming infected, none of us asked for this to happen, it just did.

I can understand being in the denile phase, I went through it as well, but the problems are still going to be there after you sober up. Just take things one day at a time. I'm sure there are people here that will be able to advise you on how to get with support groups in your area. It's not the end....

It is unfortunate that you have tested positive for HIV. In fact, all of us here have experienced the same thing that you are going through right now at this very moment. It is a phase and in time this phase will change. It does get better further down the road.

Both Queen Akasha and Rapidrod are on point with this discussion. With this, there is more of a pshycological impact than anything else. It is a harsh reality to deal with. Unfortunately, after you sober up, this very same problem will be right there waiting for you to address it. You will want to focus on building you a strong support system. With this system it will help carry you through many phases that you will encounter in your life.

I wish to extend to you a warm WELCOME here at the forums. Here you will find the encouragement, communication, understanding, support, some cries, some laughter, and many of your questions relating to HIV/AIDS answered.

We have a great group of Real people who will listen as well as answer you. We are here to encourage one another and to learn from each other.

Talking to other people helps us see that we are not the only ones with problems. Feel free to come and vent with whatever is on your mind from time-to-time as it is highly therapeutic.

In the interim, eat a diet high in fruits, vegetables, whole grains, lean protein, and low-fat dairy and avoid processed foods, saturated and trans fats. This will also help you maintain a healthy weight.

Hang in there, bud. AIDS is not the disease it once was, especially for people who know about their HIV status and get on meds before their health declines. With appropriate medical care, there's no reason you can't live a good full life. But you've got to take care of yourself.

I got very sick in August of this year (high fever, body aches, fatigue), and I strongly suspected that I was going through a seroconversion episode. But I didn't go to my doctor immediately. A part of me didn't want to know my HIV status, because I wasn't sure I could deal with the consequences of a positive test result. But I was thinking about it every night, and dwelling on the negative possibilities. As it turned out, I went to my doctor about a month later for a completely unrelated, minor ailment, and I somehow managed to blurt out that I was concerned about HIV, so he drew some blood. A week later, I got the bad news.

Upon getting my positive test results, I felt a lot of the same guilt, shame, and embarrassment you've described. I'm a well-educated, grown man, in a happy long-term relationship, and I should have known better than to put myself in a position to become infected. But after kicking myself for a couple of weeks, I realized that I couldn't change the past, and all that kicking was doing me no good. I could only change how I chose to deal with the situation. So I'm trying to be as optimistic as possible. Sure, HIV is no cakewalk, but there seem to be plenty of people who survive and thrive notwithstanding their infection.

As for denial, it seems to me that you're denying the very real possibility that, with appropriate medical care, you might just be able to deal successfully with your HIV infection, just the way lots of people deal with chronic, but incurable diseases. My doctor is a diabetic, and he opined that his diabetes is likely to affect his life span more than my HIV. He also predicted, "You won't die from AIDS." Of course, he may be wrong, but I don't doubt that he sincerely believes what he said.

So my advice is to find a good doctor. Get your labs done, monitor your numbers, and take better care of yourself. And don't forget to do the things that make you happy. Once you take those first steps in dealing with your HIV infection (rather than denying it), I'll bet you'll feel a great weight lifted from your shoulders. (I know I did).

And remember this: there are a lot of us in the same boat -- people who care about you, and want to be here for you.

Also be aware of self-punishment behavior. Remember, this situation does not define you, nor what happened. It will get better with time, but it's imperative that you do your best to forgive yourelf, there is no perfection on the face of this planet. NO ONE is above making mistakes! Realize this and only then can you treat yourself with love, both emotionally and physically. You deserve your own love!

For me it was of great help to know that I was not alone. There was no emotion I was feeling that was not felt by countless others before me. This gave me some comfort. I'm barely into 8 months since learning about my diagnosis, and I doing worlds better than I was back in February. There are tough days, yes, but overall there is only one thing to focus on: living. Nothing really changes in terms of life moving on. We make some modifications and adjustments, but other than that, just live. I use one mechanism: I see this as a temporary situation, that will be resolved soon with a cure or long-term effective treatment. If that is in the future, then I am not going to throw away the next few years being depressed and morose. Just a tought.

Hang in there, and you will see that it gets better. And remember, you are not alone!

J.

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"Hope is my philosophy Just needs days in which to beLove of Life means hope for meBorn on a New Day" - John David

My question is: How can I start to move beyond this self-destructive denile 'phase.' I feel that I need reassurance that things are going to be ok. But coming to a site like this only reminds me how badly things can go for someone with HIV. I'm just not sure what to do.

Hi Koksi,

Seems to me the things you are describing isnít denial really, but more like self-punishment. You cannot expect to avoid the things you say you fear will happen by being HIV positive by taxing your body so much by drinking to excess. That can only wear your body down.

HIV is not a death sentence. It's a manageable condition. Try to give yourself the best odds of living with it by not harming yourself anymore. There are more than just stories of "how badly things can go" here. Try reading a bit more through the posts and know that there is still reason to hope live a meaningful life. The confusion you are feeling now is completely normal. Just give yourself time and try not to predict the future.

If support groups were no use to you, perhaps seek out a trained counsellor to help. And of course, you can always come post here where people will understand you better than anyone else can.

Realizing that there is potentially a problem is the first courageous step to recovery.

Now that you know you may have difficulty with alcohol will allow you to change your habits. Don't be so hard on yourself..Your mind will heal with time...There are a lot of items we forget to think about during the initial stages of diagnosis but you are strong and will deal with them as they arise such as the psychlogical factor..Initially, I was so worried about the psychological, that I just looked at death while forgetting about the illness part..Luckily, over time, I reached a point where I was able to "accept" this and deal with it..I have become quite proud of myself..I never thought I had the strength.

There is a great group of people here to help you through when you need..Just knowing that you can rely on someone makes it that much easier.

Hi everyone, thanks very much for your many responses. They are helpful. Yes, for sure there must be good and reassuring stories here. No doubt I will come to focus on them in time. Or at least: I hope I can. At the moment, all I see is uncertainty, which bleeds into dread... or worry.

Different thoughts roam through my mind on a daily basis. I don't particularly feel 'centered' by this experience; I'm not sure what there is to 'learn' by it. I feel that I have always been an open and loving person: this is what got me infected I sometimes think.

I look at young, attractive people and feel about myself: polluted. I have been impressed with youth in a way I never have been before. I guess I feel old. Aged by the experience. Certainly unattractive, although I haven't changed externally to my knowledge.

I feel so sad to have disappointed my lover (we've been together for 17 years). I feel guilt about doing this to him. Worry that my not taking care of myself is simply making his life difficult.

I haven't had any blood work done for about 3 or 4 months, and I'm aware that I need to get something done. I am not on meds, although the initial viremia was quite severe. I guess my intention is not to get on meds for as long as possible... provided that I change my orientation towards my own health.

You need to get labs asap. Otehrwise you are putting in jeopardy the very thing you are mourning now: a fulfilling, happy, long and meaningful life. If you need to go on meds then so be it. See is as a way to stay healthy until the cure is found. Wouldn't you look silly if you allowed yourself the die, and then an announcement is made in '07 or '08 that one of the many promising vaccine cancidates currently in clinical trials does in fact work....

« Last Edit: November 01, 2006, 02:02:26 PM by J220 »

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"Hope is my philosophy Just needs days in which to beLove of Life means hope for meBorn on a New Day" - John David

Kokski, this is still very new for you. The feelings you have been experiencing are pretty much par for the course for many, although that maybe of little comfort to you when you're going through it. You need to give yourself time to get adjusted to being HIV+, and as discouraged and down as you may feel right now, that can and will pass. Life is going to go on and it's still going to be good. For starters, the best thing you can do for yourself and for your partner is to take good care of yourself.

That includes most importantly establishing a good working partnership with your doctor to keep you healthy. As has been suggested to you by others that includes having your numbers monitored regularly.

Work on keeping things as open and simple as possible between you and your partner about your feelings and thoughts. That will help to maintain and even deepen intimacy in your relationship as you meet the challenges of this new element in your lives.

Of course if you're having intercourse latex condoms are a must everytime. Many thousands of sero-dystonic couples are having good lives together including sexually, and you guys can as well.

You're always welcome here to ask questions as well as to discuss anything that's on your mind. You don't have to be anyone other than who you are.

Hi everyone, thanks very much for your many responses. They are helpful. Yes, for sure there must be good and reassuring stories here. No doubt I will come to focus on them in time. Or at least: I hope I can. At the moment, all I see is uncertainty, which bleeds into dread... or worry.

Different thoughts roam through my mind on a daily basis. I don't particularly feel 'centered' by this experience; I'm not sure what there is to 'learn' by it. I feel that I have always been an open and loving person: this is what got me infected I sometimes think.

I look at young, attractive people and feel about myself: polluted. I have been impressed with youth in a way I never have been before. I guess I feel old. Aged by the experience. Certainly unattractive, although I haven't changed externally to my knowledge.

I feel so sad to have disappointed my lover (we've been together for 17 years). I feel guilt about doing this to him. Worry that my not taking care of myself is simply making his life difficult.

I haven't had any blood work done for about 3 or 4 months, and I'm aware that I need to get something done. I am not on meds, although the initial viremia was quite severe. I guess my intention is not to get on meds for as long as possible... provided that I change my orientation towards my own health.

Anyway. Just random thoughts.

Hi Koksi~~

I know you are probably tired of hearing this but as the others have said and it is true, things will get better with time. What I am concerned about is you not having been to a doctor for over 3 months. I understand that going for the bloodwork etc is just more of a confirmation that you are poz but if you start the doctor's visits now you will be staying ahead of thngs. I'm not sure what your counts are but you may not need meds right away. I have been poz for 9 yrs now without meds and there are people here that have been w/o meds for longer than me. But it's all about taking care of yourself.

I understand your guilt when it comes to your lover but you first must forgive yourself. Speaking of which, how is things with your lover? I hope that you are getting the support you need and can support each other. Honestly, I don't feel you being and open and loving person got you infected, but instead making a poor choice, which many of us has done. Still continue to be that loving and open person despite the cards you have been dealt.

I'm not quite sure what you meant by looking at the younger people and feel polluted. HIV does not discriminate you know. I have talked to a few young people who are infected. My heart goes out to them even more than adults, because even though I know adults can be cruel, kids can be exceptionally cruel.

Just take things slowly and let it sink in. I hope things get better for you. The worse thing would be to go into denial. If you need to vent, we will be here to listen and support you. I will keep you in my prayers.

Thanks for your messages, again. One reason I haven't had any blood work done since arriving in Europe is that the health care system where I am is very unfamiliar to me, and I have been extremely concerned about confidentiality. The country I am in has a fairly paternalistic (almost big brother-like) healthcare system -- it is extremely efficient, but also very unified, and so I have had some concern about my communications with doctors. I have been assured by a local AIDS/HIV advocacy that my HIV status will remain confidential, but that was, I admit, an initial concern. It's also true that it took some time to figure out *where* exactly I should go for HIV testing and treatment.

When I left the United States, my numbers were OK. Not great: very very high viral load, but 'increasing' CD4 count (remember, I was infected in March/April). My doctor did not recommend beginning treatment.

I have stopped drinking for now, and I take a big multi-vitamin on a daily basis. I will be returning soon to my normal work out regimin, which included pilates, yoga, and weights every day. Again, moving here has required some readjustment to my exercise schedule.

So, on the one hand, my mood veers. Often, I don't think of HIV. When it does emerge psychologically, it is always as a "yeah but" sort of feeling. Often, when I'm very happy, HIV comes up as "yeah, but I have HIV." I know that I project my own feelings of being polluted onto exaggerated perceptions of other people's health/youth.

Well, it sounds like to me you are doing the right things to stay healthy. I know how you feel about trusting the doctor's with your status, I felt the same way when I first started seeing my id doc. Did you find a place to go get checked regularly? One thing to remember is that YOU are the patient and the doctor should listen to what you have to say. I hope things are working out for you and keep us posted.

Denial is a defense mechanism that has its function at the beginning of diagnosis. However, denial becomes a destructive factor in people with HIV. I just tested positive on 11/20, but I had my suspicions for years. When I finally decided to get tested after serious mysterious health issues, my T cells are down to 97 and my viral load is 23,000. I also got pcp pneumonia. This sounds dire. But i could have continued with my head in the sand and continued to get closer to death. I am lucky that I put denial aside and went forward to see what I can do to live. I guess it boils down to that. How badly do you want to live? It seems that you have a great life and there is no reason why your life can't still be great. The drinking helps the disease progression. So you need to find ways to control it if not quit completely. I have not touched a drop since being diagnosed. It is a tough choice, but I want to get better. Find out what your numbers are. Talk to people here. Get your support wherever you can. Yes, we made mistakes and got this virus, but we can look forward and see what we can do to live a long healthy life. We are human and there are many factors that contributed to our infection. We can't hate our selves for getting it. It is of no use now. We should put our energies on the good things that will help us fight the disease sucessfully. I know it sounds cliche, but love yourself, that is the first step.

I cannot agree more with what Rob said. I was in denial about my status and ignored a lot of small signs that I was positive, and I put off testing for many years, because in my mind, I have not participated in 'high risk' activities. Bad idea - denial really cost me in terms of a starting point. I started with a CD4 of 78, and a viral load of 37,000 in June of this year.

I want to add my words of encouragement - I have been on meds for 6 months, and I got for my next set of numbers on 1/9/07. At the 3 month mark, I was undetectible, with a CD4 of 220, so there was a huge improvement in a short time. In my case, the meds have hardly any side effects, and my strength, energy and appetite have returned big time.